Sunday, 4 October 2009

HELP! I'm falling between the edges

As a brief extension of the post below I thought I would do a quick mention of the fact that as I am a recovering ME patient, very very lucky in the fact I am relatively active compared to most, I have come up against a whole new set of issues. There is no help for people at this stage of the illness either! I am able to look for work part time (see posts below) but instead of being helped to reintegrate myself into society and the world of work I am constantly hitting yet more brick walls. There should surely be some kind of scheme in existence to help those like me struggling to get their independence back, to get back into work, and have equal opportunity to do so, but all I am told is that there is nothing suitable for me. I feel like I've fallen between the cracks of society and am currently bobbing along with my head barely above the water.

I live in a rural isolated location at my parents house as due to the position I am in, I am totally unable to financially support myself. The dream of moving to my own place or house sharing again seems a very long way off. Financially I have nothing, less than nothing in fact. I have lived with this illness since I was 14 so have never really had the chance to work enough to save up and support myself. I have been in and out of work through my years of study but have only ever been able to earn just enough to keep myself fed and housed with nothing left over, and often had to borrow/be given rent money by my parents (before I had to move home with them after a relapse). I have never been independent despite working to my very limits. I am SO lucky to have parents who support me but living where I do I have no friends around and no social contact, it can be very lonely. I want to work part time as much for the social side of things as for the financial.

I don't know of any provision in society for people like me, who can only work part time, yet have their illness dismissed constantly as being "not severe enough." I've worked bloody hard to get where I am now, and it has not been easy, but I honestly don't know where I'm supposed to go from here. I can't move out and support myself until I have suitable work, but there is no suitable work (where I live anyway) so my chances of ever having a social life or a job are slim indeed. Why is there no help or support for recoverers? Equal opportunities acts do not seem to be relevant to people in this position and we are left to feel like a burden on our families and to feel useless with no place in the world. As far as slowly recovering from ME is concerned, it seems to me you're damned if you do, and damned if you don't.


  1. Are you able to do the seminars provided by Job Centre plus which are about going back to work? I was told of these when I went for my interview when I was awarded IB but wholly unsuitable for me as my ME is severe.

  2. I was never told of any seminars! Perhaps it depends where you live but as far as I know there aren't such things run by my local jobcentre. I have recently made an appointment to discuss what they call work focussed training so I'll keep you posted on how that goes (not holding out too much hope though) plus theres the issue of being able to get to such training, Its difficult still as I am still not able to work a full day.